Thursday, 20 December 2018

Support groups

I have been part of support groups for the past 2 decades.  

My first exposure was in the North East.  While working with people who use drugs - or who used to use drugs and were trying to stay sober - I came across the 12 step process that Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) use.  "Once a junkie, always a junkie" was heard more than once.  Walking along people who are working with addictions meant a lot of talking and listening and talking some more.

The real core of my support group experiences was the Positive Friends meeting we had on the last Wednesday of each month at the Jeevan Sahara Kendra in Thane.  People living with HIV got together and shared their experiences.  The sorrow and pain.  The joys of seeing small victories.  The multiple challenges of living every day in the shadow of death.  We met and sang and prayed, splitting into small groups at the end of the meeting.  We usually ended by continuing our conversations over a healthy snack and tea.   One of the core values of the Positive Friends group was the amazing benefit of People living with HIV having a safe space to talk - and to be with others who understood.

We started our first monthly meetings with our JSK staff usually far out-numbering the Positive Friends.  One memorable early meeting only had 2 people with HIV present - and one of them was working with another charity whom we had invite to speak to the 'group' - which turned out to be a crowd of one!  But over the years we saw traction and the support group continues even today - every last Wednesday of the month.

Our last 2 years here at HBM Hospital in Lalitpur we have been doing a variety of things - but support groups did not seem to be in the picture.  Things have changed a bit lately, though.

Earlier this year Sheba took on the role of the Palliative Care Coordinator for the hospital.  HBM has been doing palliative care for the past decade - starting one of the first rural palliation programmes and reaching out to families who are totally crushed by the hopelessness of terminal illness.

Our mobile team goes out by jeep - reaching families in a 50 km radius.  We have about 30 people with life-limiting diseases in Lalitpur town and care for another 60 or so in the villages.  Each family is precious and our team have done an amazing work building relationships with them as they walk through the dark valleys. 

The difference between the work here in Lalitpur and in Thane is one of community.  Our team go out and help people in their homes - but people getting palliative care and their family members and survivors have not really been meeting together.

Over the past 2 months we have made 2 small steps to rectify this.  On the International Palliative Care day we brought families together to the HBM Hospital.  We sat in a circle and took turns sharing about our experiences with palliation.  A nascent support group.

I use the word "we" because for the first time in the years of support groups - I am taking part as a member rather than an organiser.  Having lost Dad 2 years ago to cancer, and having had him cared for in the final weeks here at HBM, I am now one of the families who have gone down this path.  My fellow care-givers and those who are courageously living with cancer (the main need for palliation here) are ones who I share a common experience with.

Our most recent meeting was last week at the HBM Palliative Care annual thanksgiving and Christmas programme.   Amazingly, and totally unknown to us, the Jeevan Sahara Kendra annual meet was also held on the same day!

What a privilege to meet in the new palliative care ward - beautifully painted by the members of the Mission Direct team on their recent visit to us.  Besides singing and seeing a rollicking Christmas drama and hearing Sheba give a thanksgiving report of what the Palliative Care team did over the past year, the highlight was a time where people got up and shared a bit of their lives.

As a group here, we are still new at this.  Most have not 'shared' their stories with others.   Most do not 'know' each other.  The families who came have received help from the Palliative Care team - but have not really built trust with each other.  And then there is the challenge of having people with mouth cancer (the predominant cancer here) speak.  Some can only whisper.  Others have large disfigurations to their faces.  All are precious.  But we have some ways to go on our journey together.

It's a small start, but one with much potential. 

What support group can you be part of?  There is much to gain... and much to give as we share the journeys we are on.

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